Ramping It Up: Children w disabilities, opinions, books

And after a two week break . . .

I'm back in Intensive Care with Miz M! A break of two weeks and one day, in which she's been fine and perky, although a bit weaker than before. Giggly, interactive, even managed a weekend "up the coast". Then yesterday morning, picked her up out of bed, triggering a cough, and thought oh no, my sweet girl, you're looking a tad purplish-blue-ish. Change the nappy and count the breaths - at least 60 breaths a minute, means, officiallly "laboured breathing". And a bit of a temperature.

Into Emergency by 8.30 am. Into Intensive Care by 11.

And some more interesting bits and pieces and observations, for another time.

Doctor's Wives: An annoying, sexist, supposedly demographic label

Well, we know there's an election in the offing, because one of the most annoying labels ever has started popping up in media "analysis" again. "Doctor's Wives." 

The morning began in its usual, weekday manner: alarm goes off at 6, and while nobody south of the border believes it, it's cold in Brisbane. Wrap myself around beloved and try to ignore the time. Then the brain kicks in. What if M's feeding pump finishes and the alarm goes off. What about getting to the Children's Hospital for a bloodtest. Is there any glucolyte made up. I'm not working today, but Abe is, so life will be easier if I can get to the hospital with Miz M before he heads to work, so he and Clancy can hang together.

OK, so get up. Get going. Engage brain courtesy of coffee (thank you, darling, beautifully made). Read part of the paper while we both feed children, eat breakfast, plan the day. Not too much conversation yet.

I'm driving to the Children's Hospital, hoping they'll manage to find a vein to take blood from my girl, while listening to RN. And then, there it goes.  The label that makes me sit up straighter with annoyance, and begin the endless bloody debate with myself about whether it's worth jumping up and down about.

The inestimable Geraldine Doogue on Radio National Breakfast, talking to Michelle Grattan about the election, whenever it will be, and the role of the Asylum Seeker debate, and what Julia Gillard's approach will be. And Grattan says something about the "Doctor's Wives".

This, my friends, shits me.

OK, the whole tenor of the reactive Asylum Seeker debate is annoying too; and Abbott's claims are unspeakably awful. Not wild about the fear and loathing underpinning the public discussion, and maybe that's what I really should be frothing about. And yet and yet and yet.

The casual sexism of the "Doctor's Wives" thing is so ingrained that it's never ever pulled up, interrogated, slapped down, or even seemingly noticed.

I can see why Geraldine couldn't stop mid-discussion to say Oh by the Way isn't it timed you stopped using that outmoded crappy term. It would be supposedly too PC by half. But what exactly is it meant to represent? Supposedly, it's about Middle Class Women of Affluence, whose lives are defined by their man's career and income, and their implied political views. It's lazy shorthand, that creates a group of Trudes and Judes from KathandKim, and gives them supposed political "clout". Sure, demographic analysis might be useful. Sure, trends can be followed. Sure, politics can't be truly subtle enough to allow for the real twitches and switches and thoughts of even a single street . . . But who is really doing this research? The likes of Bernard Salt, who's trotted out to repeat platitudes and generalisations and claim that it's analysis of the Australian population?

Where's the real research? Where's the qualitative research that goes beyond surveys dreamt up by particularly unimaginative marketers who once did a course in sociological surveys, couldn't quite remember the principals, and didn't do any of the humanities courses because they decided they were too "wishy washy" (or, perhaps, too challenging)?

I mean, fuck.

And who are these "Doctors"? 

All male, apparently.

All married, apparently.

And I'll swear to my last ever election campaign this is not merely a self-serving argument - but I am, indeed, while following the Prime Minister's own unmarried style (and bugger off Bettina Arndt, too), living with a Doctor. 

Oh, so it's me that they mean? Feminist lefty grumpy Labor supporters who wishes there was more Light on the Hill and a bit more vision, with a disabled child and an interest in the Yarts and Culture. A very specific demographic, that one. If only we wielded the power . . .

Then again, my own beloved could be a Doctor's Wife, too, if by their shorthand they mean PhD's in history.

Oh, no, don't tell me, they only mean medicos who are GPs or possible surgeons. Who are male. Who maybe work in a private hospital or own a chain of medical clinics.

Come on, Michelle Grattan, isn't it time you interrogated your own labels? You're smart, you're sharp, how about not throwing out these lazy lines in the lead up to an election. So many other presumptions and assumptions are examined in the media, but this one slips through year after year. 

Oh, I stand corrected: just did a quick search and in an earlier election, Antony Green made a comment about how demeaning and silly the term was. Yay, Antony!

Impossible Meetings With Doctors

On Monday we sat at a table in a conference room at the Children's Hospital opposite two extremely nice doctors, having a conversation about "end of life decisions" for our girl. About intubation, resuscitation, levels of intervention, and what it all means for quality of life; for being kind, for making sure she's not in pain or distress. This isn't because she's about to die, but because she could have died a week before this conversation, and a month before that, and a month earlier . . . and because it might happen next month, or maybe next year.

It looks rather bland when you write it down. As if it's straightforward.

It can even look cold, or uncaring, or too clinical.

Oh, hardly.

Two weeks ago today Miz M really wasn't well when she woke up, even though she'd been fine the night before. Laboured breathing; very tired; working hard. Luckily, our fabulous physio and speechy were coming over that morning for an appointment, which meant they took one look and said, hmmmmm, something is not right here. A respiratory rate of 60+ (about twice what it should be for a 3 year old). Meanwhile, the airconditioning had broken, so I was having conversations about pieces of machinery that were broken, while awaiting the young woman who comes to give us respite for 6 hours a week, so I could break the rules and ask her to mind Clancy while I took M into Emergency. Aaaaah, she had a gastro thing and couldn't make it.

So, off to Emergency with a sicker and sicker Morgaine, and a rambuctious 20 month old. Cue, temperature (39.5); cue, low SAT levels (82); cue, mucho oxygen. And thankfully, a rather nice young doctor who found a portable DVD player and the Wiggles for Mr Can't Sit Still.

And by now, the doctors all say -- but weren't you? But didn't I? And I say yep, we were in here a month ago, and two weeks before that, and a month before that.

Four major admissions since the beginning of the year.

And for some reason, we always end up in the same cubicle, right opposite the doctor's station, where once she's been whipped in to be seen to (no waiting around for us! Ever! nothing like a crisis response to let you avoid a drama filled waiting room) then I can watch them. The large, comforting doctor who always introduces himself and shakes your hand, and you'd follow him anywhere he seems so kind. The blond nurse with messy hair who just screams competence, is in five places at once, and acted so quickly the time before last when M had a seizure and suddenly lost oxygen in Emergency. She's also a paramedic, it turns out. The Baby Doctors, who veer between anxious and arrogant depending on (ahem) gender (who said that?).

I even read exactly the same magazine two admission in a row. There were weeks between admissions, but the same 6 year old magazine was there, boring me to sobs. Always always always have a novel, pen and paper, a spare pare of undies and a toothbrush. And a toddler, with plenty of snacks. Abe had a meeting he couldn't get out of a fortnight ago, but Clancy was pretty fabulous really.

Oh, and M also has hyponaetremia (spelling?) - low sodium, due to SIADH - so I now know to say, no, not just a chest X-Ray and NPA (snot test), please take venous blood asap. Really. And when you get the terminology right, and can remember the names of half the nurses, they tend to believe you. Although they have such a horrible time getting bloods, that I almost always watch 3, 4, 5 different doctors try before they get it done.

That night, after Abe and Clancy had gone home, and we were still in Emergency, M's breathing suddenly looked odd. Can you check this, I said to one of those eternally calm, unflappable, older nurses - who then told me she'd been worried and had just gone to get the head doctor to look at her. Respiratory Rate over 80 per minute. Not so good. So we end up on the ward, for two nights and a day.

It looks like aspiration pneumonia this time (as opposed to Human Meta Pneumo Virus and RSV and an unknown wacky virus the other times this year).

The first night, I sleep on the ward - after hearty greetings of "Oh, we know this child, and we know this mother!" Yep, been to this ward, before, thank you! Even been to this room. We get up there late, it's almost midnight, and there's one other woman and her child in there. Large and cheerful, introduces herself. The next day, slowly, we exchange stories. This one's a bit more Suburban Gothic than most: dreadful parents-in-law who've accused her of faking her child's illness (endless 5 minute long seizures, that'd take some coaching); break up with her husband; baptist-home-schooling stories; best friend whose husband was abusing the kids. Aaaaaaargh. Makes me feel shockingly middle class and happy. Mind you, she was quite nice; while I kept bumping into others and having bizarre conversations with people filed under P for Peculiar in Hospital Central Casting. Oi oi oi.

The next night, I go home. After so many weeks with our girl in hospital, poor Clancy is starting to notice. A mother who completely disappears? Not fair, really. And he seems fine, then gets a bit stroppy and overly emotional. So with a whole overcoat of guilt on, I head home. And was about to go back in the next morning, when the hospital calls to say, she's suddenly a lot worse. Oh, and they've put her up to 16 Litres of Oxygen (what? she was on 6 when I left) which is as much as they can give her on the ward. I go in, and the nurses won't leave her side. There's a flurry of doctors, of all varieties. Meanwhile, I had agreed to participate in a practice exam for one of the Registrars (I've done about four practice "long cases" this year, and any number of practice examinations - it kills time, and tends to be pretty interesting). So, we're going to transfer her to Intensive Care. Fine, I say, to the young doctor, I'll do the case with you as long as you don't mind that there's stuff going on at the same time. It's a way to slow my heartrate, but not, I suspect, his.

Six days in ICU. She was within a hair's breadth of intubation. They used BiPAP instead (where the machine breathes for you), then CPAP (a different type of pressure), before a transfer back to the ward for another - oh, I don't know - four days.

Thirteen days.

And last Friday, the neurologist came around, to say that he thought there was something else going on. Something besides the Hypotonic Cerebral Palsy, something that he can't quite get to the bottom of. I think he has a few ideas, but can't get him to really spell them out. It's because of the low sodium; it's because she's so very disabled. It's because she has no myelin at all in her brain. So he's ordered genetic karyotyping, and a "CGH Array", which is all about genome mapping and a possible chromosomal abnormality - of the rare and "interesting" variety. Demyelination. Leukodystrophies.

You know, he says, her prognosis is not very good.

Well, slowly, I had come to realise that. Maybe that's why I haven't been so good at writing here -- much as I really needed to.

Abe already knew. He knew before I did. And a few months ago we'd forced ourselves to confront that, and did it very badly at first. I began to work out how to ask the right questions, and found the research on Life Expectancy for children with CP when they have M's level of disability. Such limited mobility, being non verbal, peg feeding, little head control, having been born full term, tended to mean a 40 % chance of living to be ten, for example. But that's probably way outside what we can think of. Especially because there's something else gong on.

And poor Abe. My unthinking optimism made it very hard for him to say, look, her quality of life isn't very good. It silenced his despair. It didn't give him space to say, actually, this is pretty fucking heartbreaking. 

So I'd celebrate a smile - we both did - and a tiny tiny improvement, and he'd also be terribly sad about all the things she couldn't do. It took a really difficult conversation, months ago, to realise that our perspective on things needed to come closer together, or at least, needed to acknowledge each other better.

So I'd be worried about how vulnerable she'd be as a teenager or a young woman; and he'd tell me to live in the moment (which was fabulous), while really knowing that it wasn't something we were ever going to be dealing with.

And slowly, the question of how you deal with hospital and medical systems in a type of real crisis had come to the fore. A year ago, standing by a hospital bed while on holiday in Proserpine, a nurse asked us if we'd made decisions about resuscitation. It jolted me like the lightning that struck the character in Tracey Chevalier's latest book. We were completely unprepared then; not much better recently. What, exactly, does it mean, and in what circumstances?

So for the last month or two we'd started to talk about it. I thought Abe might know, as a medical person, but he wasn't sure how these decisions come about either, in light of a general duty of care and doctor's ethics, and how anybody can sensible respond to what you've decided. It's different if you're an adult, making your own Advanced Care Directive. It was on my agenda for an appointment with the paediatrician that was going to happen tomorrow. 

Then, after that conversation with the neurologist, I decided to contact the Social Work Dept at the hospital, and asked if they had any guidelines or reading or advice. What we really needed, was some terminology and a framework. Of course, it's bread and butter to them. It shows the ways in which these large institutions really are compassionate, and complex, and subtle. They deal with this type of thing all the time. A Family Conference, she said, that's what you do, with the doctors, and an advocate, and a social worker, and you go through in detail if this, then this; if this, then this; and it's in the Chart, and you can have a copy yourselves, and you can change your mind at any time.

Oh.

So suddenly, it happened. Just the two of us, and these two rather wonderful women doctors, having an impossible meeting.